A Letter From a Caregiver, Susan Israel

My name is Susan Israel, wife of Jeff Israel. We celebrated Jeff’s 60th birthday in July 2011 and he passed away on January 17, 2012 due to complications from Alzheimer’s disease and Parkinson’s disease. He was a wonderful husband, father, grandfather, businessman and community leader.

Initially we didn’t understand what was causing Jeff’s problems – his forgetfulness, disorientation, lack of ability to work effectively, if at all. Neurological tests in 2008 indicated possible Alzheimer’s, but there were other dementia possibilities considered such as Frontal Temporal Dementia (FTD), Progressive Supranuclear Palsy (PSP) or Corticobasal Degeneration (CBD), given that Jeff was exhibiting many physical anomalies in addition to the dementia-related issues. Doctors at Emory confirmed dementia of some type in 2009. Post mortem autopsy revealed that he, in fact, had Alzheimer’s Disease in addition to Parkinson’s. Jeff was never diagnosed with Parkinson’s, nor treated for it.

I was Jeff’s caregiver at home, with help from at-home health care beginning in August 2011, then hospice care in December and January 2012 until his passing on the 17th. I was honored and blessed to care for him. I do, however, understand the challenges, the tears, the feeling of helplessness and despair associated with Alzheimer’s.

My husband’s disease(s) progressed very rapidly. By July of 2011, Jeff required substantial assistance with walking, eating, and toileting. I had been providing some assistance for these daily activities including helping him dress for several years at that point.

Many nights I cried, especially as Jeff could no longer sleep and the bathroom issues and accidents progressed – he went from him not “seeing” or understanding how to use the toilet to complete incontinence. My first call to the Alzheimer’s Association was in the middle of one of those nights at a time when I felt alone and didn’t know where to turn. The person on the other end of the line gave me encouragement and explained the Association’s resources. She could give me understanding that family members, as well-meaning as they were, just couldn’t provide.

I was blessed to find other support through in-home care services, then a doctor who recommended hospice care. Hospice came as a huge shock to me. I truly did not think we were there yet, but I was actually almost too late bringing in that help. Jeff was able to get medication that allowed him (and me) to sleep, as well as getting much needed physical help. One lesson among the many I learned through our journey is that by the time you bring in help, you’ve probably waited too long.

Further, a caregiver can’t do it alone. There are resources available if you reach out. Reaching out, I believe, is key – we have to admit that we’ve become overwhelmed and need help. That’s not always easy to do.

This is a glimpse at my experience as an Alzheimer’s caregiver. Every situation is a little different. I was told, “if you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s”. Caregivers, I’ve found, share universal heartaches.